The Family Meeting: A Fundamental Palliative Care Intervention

1. The Family Meeting: A Fundamental Palliative Care Intervention Wednesday, October 26, 2011 Audio Conference 1:30 – 2:30 PM EST • Timothy E. Quill, M.D. Professor of Medicine • Center for Ethics, Humanities and • Palliative Care • University of Rochester, • School of Medicine • New York NY • E-mail: timothy_quill@urrmc.rochester.edu • Sandra Muchka, RN, MS, APNP • Clinical Nurse Specialist, Palliative Care • Palliative Care Center • Medical College of WisconsinMilwaukee, WIE-mail: smuchka@mcw.edu

2. Learning Objectives • In this audio conference, you will learn how to: • Identify key elements needed to prepare for a family • meeting • Understand the usual sequence and techniques for • beginning and progressing through a family meeting • Identify ways to move the clinical decision making process • forward toward the end of the meeting • Additionally…. • Review strategies for responding to emotion and conflict

3. Pause and Reflect … • You are about to meet with the wife and two grown children of a man who had a massive stroke 4 days ago • He is obtunded, globally aphasic and hemiparetic. • The nurses have told you that they are very • “unrealistic”. • What thoughts and feelings go through your mind as you prepare to meet with this family?

4. Why learn about family meetings? • Common part of palliative care practice • Most clinicians have had no formal training • Little empirical research about what works • Some consensus among experts about what works • If the patient is unable to speak for himself, need a • consensus among family members to set any limits

5. Family Meeting in 9 Steps • Preparation • Establish the proper environment • Introductions and relationship building • Pt/family understanding of condition • Medical review/summary • Reaction/questions • Set goals and negotiate options • Translate goals into care plan • Wrap up and document

6. Step 1: Preparation • Review medical history • Efficacy of disease directed therapy • Current palliative treatments • Prognosis with and without treatment • Consensus among treatment teams about prognosis? • Have any limits been set? • How have decisions been made so far? • Is the patient capable of decision making? • Review ACP documents • What is known about family dynamics? • What is known about provider dynamics?

7. Step 1: Preparation (continued) • Meeting leadership and key clinicians present • Palliative care, primary care, key specialties • Clinical expertise and meeting expertise • Dynamics among treatment teams • Patient, family and other key people • Is patient capable? • Key family members • Other central people in the patient’s life • Pre-meeting (ideally well in advance) • Agreement about problem, prognosis, goals? • Negotiation about meeting leadership • Brief “huddle” if no time for pre-meeting

8. Step 1: Preparation Determine Your Goals for the Meeting (continued) • Your goals may include one or more of the following: • To share information about the patient’s current condition and/or prognosis • To learn about the patient’s views and values • To establish (or repair) a relationship with the family • Reach a specific decision; (e.g. withdraw ventilator)

9. Step 2: Establish Proper Environment • Private • Comfortable • Circular seating preferred • Turn off pagers/phones • Allow sufficient time for everyone to be heard

10. Step 3: Introductions/Relationship Building • Meeting leader introduces self, briefly describes his role in the patients care, and invites everyone there to do the same. • Meeting leader briefly reviews meeting’s goals • Consider asking a non-medical question about the patient • “Before we get started, I wonder if you could give us a sense of what Mr. ____ was like before he got sick?”

11. Step 4: Patient/Family Understanding of Condition • “Tell us your understanding of the current medical • condition?” • “What have the doctors told you so far?” • “What changes have you observed?” • Encourage all key family members to respond • Also ask about changes over the past 1-6 months • N.B. Do not skip this phase, as it provides key • information about the family’s perceptions and • receptivity

12. Step 5: Medical Review/Summary • Summarize “big picture” in few sentences—current • condition, expected course, prognosis if known • Base what you say on what the family has said/knows • Confirm what family has said that is correct • Add critical new information if needed • Correct misunderstandings • Generally this phase should be led by main treating team • Hopefully agreement on medical issues achieved in advance • Clarify areas of certainty and uncertainty • Will time, testing or intervening help to clarify prognosis?

13. Step 5: Medical Review/Summary (continued) • Avoid a prolonged medical monologue • Ask if the family would like to hear more • Tell some more information • Ask if they understand or have any questions • Ask if they would like to hear about prognosis • Give an average range (hours to days; days to weeks) • Be sure to allow for exceptions in both directions • Use “dying” if appropriate • If prognosis may be hours to days, let family know • Avoid euphemisms and jargon • Answer questions • Allow for silence

14. Step 6: Reaction/Questions • Expect and respond to emotional reactions • Acknowledge (This information is upsetting) • Legitimize (Anyone hearing this information would be upset) • Explore (Tell me the most upsetting part.) • Empathize (This must seem very unfair.) • Explore strengths and coping strategies (What has helped you • cope with things like this in the past?) • Prepare for common reactions: • Acceptance • Conflict/denial • Grief/despair • Anger/blame

15. Step 7: Set Goals and Negotiate Differences • Define areas of agreement and disagreement • Nature of the problem • Goals of treatment • Methods of treatment • Condition of treatment • Patient-physician relationship • Source: Lazare: Conflict identification

16. Step 7: Set Goals and Negotiate Differences Getting to Yes: Negotiate Differences • Listen and understand each other’s position • Separate the person from the problem • Explore the likely effects of each choice • Invent new solutions of mutual gain • Give in in non-essential areas • Take a “time out” • Call in a third party • Source: Fisher and Ury

17. Step 7: Set Goals and Negotiate Differences (continued) • Make a recommendation and allow choice • Good and bad paternalism • False autonomy: independent choice • True autonomy • Information and expertise • Physician experience and recommendation • Patient choice • Mutual influence • Stress priority of comfort—no matter the goal

18. Step 8: Goals/Care Plan/Wrap-up • Review current and planned interventions • Discuss any treatment limitations • DNR, DNI, Feeding tube • Hospice/home care • Future hospitalizations • Identify family spokesperson for ongoing communication • Schedule follow-up meetings • Summarize all decisions made and immediate next steps

19. Step 9: Documentation/ Communication • In your note, document: • Who was present • What was discussed • Agreed upon goals • Decisions made • Decisions pending and unresolved issues • Follow-up plan • For billing purposes, include start and stop times

20. Step 9: Documentation/ Communication • Discuss with team members not in attendance • Especially if key decision-makers were absent • Include care providers with major involvement • Check your emotions • Do you need to debrief with a trusted colleague? • Were there parts of the meeting you are uncertain about? • Team debriefing • Discuss strong emotions and reactions • Review the sequence and flow of the meeting • Explore the most difficult and most successful parts • Show your human sides • Is any debriefing or follow-up needed with others present?

21. Some Additional Challenges…

22. Patient/Families Who Want “Everything” • Consensus on team that treatment is near futile • Repeated attempts at limit setting unsuccessful • Everything that might help but not those that would only harm… • Further meeting and negotiation seems abusive • Accept that this is their desire • Do not discuss treatments that are truly futile • Can limit CPR to one cycle based on medical futility • Try to support staff and support family, and lessen tension

23. Patient/Family Who Want to Stop Prematurely • Review their understanding of the problem and prognosis • Be sure you understand the patient’s goals and values • Try to find common ground • Setting limits on the most invasive treatments • Putting time limits on clinical trials • Seek middle ground • Consider ethics consultations

24. Time-Limited Trials • A potential middle ground between “everything” and “nothing” • A way to try an invasive treatment to see if it helps without consenting to be permanently dependent on it • A brief intubation for CHF or pneumonia (but no trach) • A trial of dialysis to see how one adjusts • A trial of careful oral feeding after “failing” a swallow evaluation • A brief intubation after hypoxic brain injury to see potential for recovery • Includes specific markers of improvement or deterioration • Can give families time to prepare and adjust

25. Disagreements Between Treating Teams • Not uncommon in major medical centers • Challenging role as a consultant • Invited in by the main treating team • May set limits in terms of goals or limit setting • Family may be asking very different questions about goals and limits • Conflicting responsibilities to family and to consulting team • These issues must be resolved before family meeting if possible • Balancing act between responsibilities to consultee and family • Dangerous terrain for a new palliative care team

26. Ethics Consultation • Useful when conflict seems not resolvable • Often centered on communication breakdown • Useful when it appears patient is being harmed • Family conflict where a member does not seem to have the patients • interest at heart • Conflict between treating teams • Opportunity to get a fresh look • Makes recommendations but not necessarily resolve the issue • May also need legal consultation in some circumstance

27. Summary & Conclusions • Family meetings have a similar structure • Critical to prepare for such meetings, especially if they • involve several treating teams • Be sure to listen to the patient/family experience before • proceeding with treatment recommendations • Be ready to deal with strong emotion and conflict • Try to negotiate differences and achieve common ground • Make recommendations based on knowledge of the patient’s clinical condition and the patient/family values • Take time to debrief and support each other

28. References and Resources Back, A.L., et al., Dealing with conflict in caring for the seriously ill: "it was just out of the question". JAMA, 2005. 293(11): p. 1374-81. Curtis, J.R. and D.B. White, Practical Guidance for Evidence-Based ICU Family Conferences. Chest, 2008. 134: p. 835-843. Fisher, R. and W. Ury, Getting to Yes: Negotiating Agreement Without Giving In. 1981, Boston: Houghton-Mifflin. King, D.A. and T.E. Quill, Working with Families in Palliative Care: One Size Does Not Fit All. J Palliat Med, 2006. 9: p. 704-715. Lazare, A., S. Eisenthal, and A. Frank, Clinician/Patient Relations II: Conflict and Negotiation, in Outpatient Psychiatry. 1989, Williams and Wilkins: Baltimore.

29. References and Resources Quill, T.E. and H. Brody, Physician recommendations and patient autonomy: Finding a balance between physician power and patient choice. Ann Intern Med, 1996. 125: p. 763-769. Quill, T.E., et al., Discussing treatment preferences with patients who want "everything". Annals of Internal Medicine, 2009. 151(5): p. 345-9. Suchman, A.L., et al., A model of empathic communication in the medical interview. JAMA, 1997. 277: p. 678-682. Weissman DA, Quill TE, Arnold RA. The family meeting. Six part series in Fast Facts and Concepts; EPERC website; # 222-227 http://www.eperc.mcw.edu/EPERC/FastFactsandConcepts

30. Hot off the Presses! Additional References Billings, J.A., The End of Life Family Meeting in Intensive Care Part 1: Indications, Outcomes and Family Needs. Journal of Palliative Medicine, 2011. 14(9): p. 1042-1050. Billings, J.A., Part II: Family-Centered Decision Making. Journal of Palliative Medicine, 2011. 14(9): p. 1051-1057. Billings, J.A. and S.B. Block, Part III: A Guide for Structured Discussion. Journal of Palliative Medicine, 2011. 14(9): p. 1058-1064. Quill, TE and R Holloway. Time-Limited Trials Near the End of Life. JAMA. 2011.306(13): p.1483-4.

31. Question & Answer Period Thank you for joining us today! ABOUT CAPC The Center to Advance Palliative Care (CAPC) provides health care professionals with the tools, training and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings. Located at Mount Sinai School of Medicine, CAPC is a national organization dedicated to increasing the availability of quality palliative care services for people facing serious, complex illness.

32. Continue the Discussion on CAPCconnectTM Forum! At the conclusion of this audio conference, we welcome you to continue the discussion with your peers and faculty on CAPCconnectTM Forum! Go to: http://www.capc.org/forums to post your message and comments within “General Operational Topics” discussion topic!